For Patti

12/31/13

"There is a weird  thing that happens when you fall outside.

When you find out your child is deaf you mourn, you mourn hard if you know nothing. Then you find out it is ok you meet other people and over time you learn it is ok to joke. You laugh about how he leaves the water on with others who know. You are in the club. The club is comfort and power to be strong and enjoy life. You love your community.

Maybe later your other child dies so fast you can't catch your breath but guess what…. there is a club for that where other people feel just like you do and over time you share and feel better and you find yourself laughing maybe with guilt at laughter but laughing again and moving on.

Then maybe you find yourself again scared and confused because something is so wrong. Maybe it is so random or wrong you don't want to find a common thread. Body failure….rare disease????? You want to think the thread others find comfort with is a reason to run.
This thread weaves the other threads together in a cruel tapestry that challenges your ability to breathe.

I don't want to join your club."

Patti I wrote this last year. Since then my son for some reason willed himself better. His disease is controlled right now. He beat the odds so much that he is cast as a principal in a play. I honestly believe it is because he has had to fight all of his life,  his life was "Deaf normal". When the hospital told him he was  a "Make A Wish" candidate he got grumpy (well pissed off) and said there are kids who are really sick. Haddy is a fighter.

So now we are busy and living large but different.  He has a cruel disease but as far as we are concerned it can kiss our asses. (sorry a bit harsh for a preschool teacher)

Thank you for checking in. You are a kindred soul,
Mel

How did we end up here?

I always imagined my son would end up with a nice Deaf girl, go to college and make me proud. Simple.... hopeful

Well I don't get to plan anyone's life!

Yes, I am so proud.

 My son is kicking ass with his grades so college is going to happen. That is a big relief since he is the only Deaf kid at school. His school demands high academic performance.

He has a group of friends....... the only Deaf kid has real friends at his mainstream school. I imagined his entire life at a Deaf school.

I remember sitting with Larry Fliesher asking him if Haddy would be OK..... he said yes and told me his daughter was mainstreamed.
Richard Kendall his first teacher said ....yes
Harlane Lane told me ..... yes

I was a helicopter mom.... now I just observe.

Haddy wanted to see "Rocky Horror" and loved it so much he auditioned for the cabaret cast . He got a part....
He has been working with hearing people in theatre for years...

Time to let go......

Remember The Day He Was Identified

So tonight we are so busy. Everyone is just dealing with just normal stuff. I am, I have a busy young daughter and a teenage son. Funny how as they get older it gets easier but harder. No more diapers, car seats or political fights.

I was talking with my Deaf son tonight about his schedule in the morning. We have a family party and his dad is coming. He however has plans. He has friends.

I for no reason remember a few weeks after he was identified and I felt hopeless trying to sign with this really cute little baby.

I was in the book store at the Beverly Center with Haddy. He was so cute and I was a chasing him signing. A man walked up and signed, " You Deaf?"

"No, son deaf"
What happened next changed our lives

He told me my son would be OK... I didn't believe him.

This man told  me his thoughts and made me feel like I did something right. This man was a teacher of the deaf and deaf himself.  He ended up being Haddy's first real teacher. His name was Richard Kendall but we used his sign name RK. I often wonder what would of happened if
I didn't meet that man at that moment.  What if I didn't have one person just show up and give me the signal.

I am lazy now, that work we did just doesn't show up everyday.  Life is easy now but still hard.

Acceptance Or Apathy?

Here I sit in the same situation I have been pondering for fifteen years..... when do we walk away and accept it just isn't fair? When do we dig deeper and get the rusty soapbox out? When does mama come out of hiding?

I'm  used to being a fighting tiger jumping at every chance to champion my son's cause. That was important before he couldn't fathom the complexities of his life journey as a Deaf person in this country. The laws are complex and often ignored or misunderstood. My goal of course was to let go and let him take the lead when he was ready. That happened.

My son is getting good grades (he told me he has an AP class next year ) and hanging with his tribe of like minds (all hearing but they sign). They want to go to "Rocky Horror Picture Show" and you may judge me for saying OK.

I know the movie and the culture that surrounds it. I went as a teenager behind my parents back. I want him to go and experience this old movie with all the bells and whistles. I don't want him to miss the part where everyone yells "slut!" yep , I am most likely a bad mom. I just feel my Deaf son is capable. Capable of making good decisions and seeing this movie with interpreters will not in any way corrupt him.  Hearing teenagers  don't have to plan the date night. Mine does. No worries, I will pass on apathy and beg for accommodation.

YOUR DEAF SON IS FAILING ASL 1!!!!

The text from my ex husband comes late after I already sent myself to bed. He is checking the kids grades online. I am really tired.

"  HE'S FAILING ASL!"

OK, breathe, what? , "I will inquire about his grade with him in the morning."

15 years ago

We started signing with Haddy when he was a baby. We studied ASL as a language and not as a bridge to spoken language. We realized we couldn't achieve fluency fast enough to meet his needs so we surrounded ourselves with native signers.

I advocated for ASL to be taught to Deaf children the same way English is taught in general education classrooms to hearing kids. Right.... we don't teach ASL grammar to Deaf kids.

Today

My daughter has been in Spanish immersion for five years and reads above grade level in English. Oh yea, she is  fluent in Spanish and ASL. Turns out children can be naturally bilingual. (trilingual....)

Now, here is the kicker....

So does my son. He reads wells above grade level in English but is failing ASL.

Why? He didn't finish a report on" Deaf".  Yep, like any other class a kid would take he gave a half assed energy to a report that is about him.   All of my son's life he has been exposed to Deaf. The teacher assigned a report and he took the diva out. So I am sure he will pull at least a C by grading time. ASL is his first language.

Consider that in the time while others do their research he is "hearing" about himself. They are reporting on his people. These reports reflect back on him,

He is 15, Deaf, mainstreamed and tonight no interpreters showed up for his play rehearsal. That sucks but he managed.

I'm OK with him forgetting his report but he still needs to cleans his room and can someone text my EX please and tell him we are fine?

Yawn..... wake up and go

I quit blogging because my Deaf son entered that stage of his life where I allow him to control it. He asked me to stop.

Yesterday his control decided my blog was a good thing. He wants me to share what it feels like to be Deaf in his world. So with his help here we go,

Update:

My 15 year old deaf son is busy with his rehearsals for "Our Town". He attends a mainstream magnet art school and is considering a modern dance and film focus. He also started his education at a two state deaf schools.
 My 10 year old daughter  is in a Spanish immersion program (fluent in three languages) and enjoys her violin.
I am now a single parent.

Let the story begin

Just A Thought

you: turn off all lights in rooms you are not in
me: leave a light on in case someone needs to talk and make sure there is a light path
you: hear your child scream "MOM!"
me: feel the floor pound and see a flash
you: yell back a response
me: wait for child to come to me or..... get up from work and go into the lighted room
you: continue to work
me: stop and talk
us: wondering why that issue interrupted our work